Tips & Tricks Volunteer Work When You Are Chronically Ill

My tips and advice for volunteer work when you are chronically ill

Today I’m tackling a topic that a great number of my readers are involved in – advocacy and volunteer work when you are chronically ill.

Over the past decade I’ve found that as I’ve gotten sicker, I’ve struggled to find purpose and meaning in life after losing so many things that were important to me before I got sick. A great number of us find satisfaction and purpose with volunteer and advocacy work.

But what kinds of volunteer work are appropriate for those of us who are chronically ill? Is it possible to find volunteer work that won’t drain our already limited energy resources?

The answer is yes! There are plenty of ways you can support if you are inclined to do so while also keeping a firm hand on your health limitations.

Today, I’ll tell you about the types of volunteer work I’ve been involved with over the decades. I would love to hear from you about this if you’re an advocate or a volunteer! Drop a link in the comments if you’d like to highlight something you are particularly proud of.

If you’re not involved with volunteer or advocacy work, that’s ok too! We all find our own solutions to contributing to a life that is meaningful.

Volunteering – My Thoughts

Volunteering is a great way to meet new friends with similar interests. I’ve volunteered to teach and I’ve assisted at orphanages and battered women’s shelters through direct work and via fundraising events. I’ve provided free content for health organizations that were looking to plump up their websites; and I’ve also offered free editing and website service with new health organizations.

As a Canadian in Taiwan, I was involved with the Canadian Chamber of Commerce before it became too much for me. (Recognizing that I needed to step away took longer than it should’ve, but it was a rewarding experience for me which is why I stayed so long.)

Right now, I’m still volunteering with women’s organizations, which is something I’m passionate about. The women I volunteer with understand my health challenges and they are incredibly supportive. This type of work fosters women to women friendships. I’ve found myself endlessly grateful for the friendships I’ve made through advocacy and volunteer work.

I also volunteer throughout the year with various non profit health organizations related to inflammatory arthritis, fibromyalgia, ME, chronic pain, and disability awareness. I’m a proud volunteer with Support Fibromyalgia Network, International Foundation of Autoimmune and Autoinflammatory Arthritis, the Spondylitis Association of America, Walk AS One, and Crossroads Taiwan, to name a few.

It’s immensely satisfying, but I’ve learned you need to pay attention to what you’re doing and how you’re doing it.

PRO: Being chronically ill has given me more time to dedicate to advocacy and awareness work. I love this kind of work!

CON: Too much will make you sick. It’s important to find that balance. You can check out my post on pacing if you’re interested in learning more about how I balance my work output with volunteer work.

Volunteer Work When You Are Chronically Ill

SEARCHING

There are hundreds of unique volunteer opportunities for individuals who are chronically ill. The main reason we do so is to give back to the communities that support us.

You’ll not only be doing something rich and rewarding, but you’ll also have an opportunity to immerse yourself in a topic you’re passionate about. Volunteering can give you a chance to make a difference. It can also give you something to look forward to if you’re not working and you’re looking for a positive way to fill those hours at home in bed.

Searching for the right kind of volunteer work when you are chronically ill can be tough. I’ve loved all the volunteer positions I’ve been a part of, but over the past five years, it has become clear that some types of volunteer work are sustainable for me and others are not.

For example, I’ve been involved with the Canadian Chamber of Commerce in Taiwan since 2014. I held an official board position which involved organizing, attending, and hosting a number of events for Canadians in Taiwan for several years. When I started volunteering with this position, I was in remission, but I quickly overdid it and was not so aware of pacing myself back then. I also underestimated how much time out that I’d have to commit to attending government functions, networking events, delegation events, and fundraising events.

Those events were hard on me. I was out of the house at least four times a week for the Chamber. I loved everything that we accomplished and in 2014, I was able to do all of it. But as time went by and more event planning and work added up on my plate, I realized I was spending most of my time hosting board meetings and planning events that I could not attend!

I did a lot of soul searching with this volunteer position and eventually ended up stepping down from it last year because my health was suffering from it. Now I support from afar and if they need help, I’m happy to pitch in if I can.

As for in person events – I’ve had to give those up completely because of my health and that’s ok! I’ve found other ways to contribute and this experience has taught me so much about myself and what I am capable of and what I need to say no to.

So what does a volunteer do when they can’t attend events in person anymore? She searches for something that is manageable and that suits her home schedule.

Time and energy output are two things you really need to think about. Eventually, a perfect fit came along with a group called Taipei Ladies, which is a group of 5,000+ women who exchange information and provide support where it is needed. We host events, but they’re infrequent. It’s nice to go every once in a while and feel like I’m participating. And since this group is online, it has proved to be very meaningful since I can help from home on my own time.

1. When you are searching for volunteer opportunities, think about your time and how much you can give.
2. Ask if there are specific things that are required from you. Are you required to attend all events? How many hours do they expect you to put in each week? Do you need to be online at certain times throughout the week? Are they aware of your health challenges and are they willing to work around them with you? Most importantly, do they understand that sometimes you might not be able to volunteer because you’re flaring?
3. Make sure that the hours are manageable and what you’re doing brings you joy and ZERO stress.

Finally, I’d like to add that in-person volunteer options haven’t been an option for me for years, but being able to volunteer online with various organizations has been such a huge part of my life and such a rewarding experience, especially when organizations are willing to go global or international. (COVID had one great perk and that is that it forced everyone to work online and meet online. It opened so many doors for me.)

HOPING 

This prompt is an easy one to tie into volunteering because at the end of the day, we all want to help others and hope that we can help or support as best we can.

Volunteering can be the adventure of a lifetime! But it comes with a unique set of challenges that you’ll want to consider:

• Communication barriers – Simply put, those of us who are chronically ill have to communicate well and be up front about what we can and can’t do. Most organizations will keep asking for more. Be strict and specific about your time and availability.
• Work Culture – Getting involved with a new work culture can be overwhelming. It can often be a bigger adjustment than we think it will be. I’ve found that asking specific questions about what organizations expect from their volunteers is great. If they’re vague, perhaps it might not be a great option for you. Also, don’t be afraid to ask about challenges that the organization is facing. This is  really important  as most organizations aren’t up front with this information.
• Limited resources – The communities that you volunteer in usually don’t have extensive resources or educational materials. Be prepared to think ahead and be creative.

Honestly, though, volunteer work when you are chronically ill can often just mean providing support, sharing your own story or knowledge, lending a skill set to someone who needs it, or even fundraising for certain causes that need attention and financial assistance.

Every helping hand can provide hope and awareness.

HONOURING 

I’ve always viewed volunteering as an honor.

It’s a great way to build your skill set on your CV. More importantly, it is rewarding and it can open many doors for you. If you can find the right position that respects your limits, you’ll find that this is something that can create a lot of passion and good feelings about the work you’re doing.

A great many of us choose to get involved with advocacy work. What a wonderful way to honor yourself and other patients who suffer from the same thing you do!

RESPONDING 

My response to volunteer work is this: Giving makes us happy! There is no doubt about it!

We all know what it feels like when we do something for someone else. When you lend a helping hand to someone in need, when you give someone your time and just listen, when you do something just to see the look of joy on someone’s face – that’s what we’re all in it for.

Thanks so much to Sheryl at A Chronic Voice for providing me with this opportunity to write about this topic this month.